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Have your say: a snapshot of what we’ve heard so far

Thousands of you have responded to our call out since we started our work last year. We have also met with participants, family members, carers, disability workers and service providers, as well as government officials, from all around the country. All up we have already held more than 200 meetings – and with many more to go!

We’ve been working through everything you have told us. Your experiences and your proposed solutions have shaped all of our thinking. As a result of all your work, we have some ideas which we would like to talk to you about. We also have some more questions we would like to ask you. So expect to hear from us again in the coming weeks.

But before we get to that, we want to share a very short snapshot of the online submissions with you. That way you can see what the people are saying and what big topics are emerging.

But just remember – there is still plenty of time for you to add to this picture. We will provide some more information at the end of this article about different ways you can have your say.

What we have heard from our online campaign

More than a thousand people and organisations have made a submission on the Review’s website.

In the “Have your say” section of the website we have asked four big questions:

  • What are your three main problems or concerns with the NDIS?
  • How do these three main problems affect you and/or others?
  • What do you think are possible solutions to those problems?
  • What parts of the NDIS are working well for you?

Firstly – who have we heard from? Two thirds of responses on the website were from people with a disability, family members or carers. One quarter were from providers or worker in the NDIS.

Snapshot of responders from the Have your say campaign

Image: Snapshot of responders from the Have your say campaign

So what did you have to tell us?

What’s working well in the NDIS

You told us when things are going well, the NDIS really can be life changing.

Many people told us about the difference support had made to their lives, with the chance to do things they never had before. We also heard how much people valued the ability to choose and organise supports in the way that worked best for them. We also heard how much people valued good quality services and workers who are skilled, respectful and go the extra mile.

Many people expressed their appreciation to the Australian community for supporting such a life changing initiative.

‘Since having in-home and community access support, my wife has been able to begin part-time study and is hoping to be employed within the next 6 months… this has become an exciting prospect for everyone in the family. The importance of this can’t be overstated… thanks to the NDIS there is hope.’

Where we need to improve the NDIS

You also told us that many things are not working well in the NDIS. The most commonly raised problems were with accessing the scheme and with the planning process. More than 74% of submissions mentioned problems with planning.

Some of the problems we heard about included:

  • Planners and Local Area Coordinators lack the right skills and experience to understand the needs of participants.
  • There is a lack of direct communication with the people who are making life-changing decisions.
  • Planning reviews are stressful, drawn out and take too long.
  • Participants are scared about what will happen if they say the “wrong” thing or don’t use the right words to describe their needs to planners or Local Area Coordinators.
  • People are tired of spending money and time on reports that never seem to get read.

‘Unskilled staff with no medical/clinical knowledge are reading medical assessments and assigning a plan which is not representative of the clients’ needs. They do not understand... and just approve a generic plan.’

You also told us that the NDIS is too complex, too confusing and too hard to navigate. And there is not enough help for you to work your way through it. Local Area Coordinators are not helping people enough – and sometimes actually make things worse. And finally you told us that despite all the promises, many people still don’t have the support they need to make choice and control real. For too many people choice and control are just words on a page.

You told us that all the problems with the system have a real physical impact on you and your family member. We heard about stress, frustration, burnout, depression and anxiety for participants, families and their carers.

This has to change.

How we can solve these problems

You gave us so many fantastic ideas to think about. When it came to planning, three ideas came up the most:

  • Better training for planners and Local Area Coordinators.
  • Read reports and listen to recommendations from experts and health professionals.
  • Provide greater transparency, communication and accountability during the planning process - including giving reasons for decisions.

'Staff working within the NDIS should have proper disability training and understand multiple aspects of disabilities.'

In other areas the most common solutions suggested were:

  • Less red tape and barriers to create clearer, more streamlined and faster processes
  • Treat people as human beings with dignity - and respect their human rights
  • Individualise decision-making support for all participants (at least in first plan)

'Overhaul how NDIS works, make it faster and easier for the people who need it.'

Moving into the next phase of the review

This article is just a short summary of the huge amount of data we have collected from you so far. We will be releasing a more comprehensive look at the results very soon. As part of that we will include some more questions we would like you to answer as well as some ideas we would like you to think about.

As we continue our work, we will keep asking for your insights and solutions.

The Have your say campaign will stay open on our website until August.

But that is not the only way you can have your say.

We are also partnering with Every Australian Counts and a range of disability organisations to give people lots of ways to contribute. These activities start in the next few weeks. So please get involved and help us get the NDIS working the way we all want it to.